Wednesday, January 26, 2011

For Christmas this year Cicily, Maya and Sophie got chicks! Cicily loves animals and has been a huge fan of her cousins' chickens for a while. We decided a new pet that Cicily would love and that could give us eggs to eat wasn't such a bad idea. So the girls got 5 baby chicks Christmas morning - Brunhilda (Bruni), Freedom, Liberty (Libby), Gingerbread (Ginger), and Peach. Bruni is Cicily and Maya's favorite. She's the brown one featured in all the pictures below. The chick will just sit on Cicily's shoulder while Cicily snuggles her, it's quite surprising behavior from a bird! Now that the chicks live outside in their coop, the first request after Cis wakes up and the last request before she goes to bed (and multiple other times during the day) is to go outside to see the chicks.

Chick on the head used to be a favorite of Cicily's when they were small enough to perch on her head. Cis with all 5

Thank you to everyone for your thoughtful comments about Cicily's new news. We always love to hear how she has impacted someone's life. Thank you for the prayers, they always help us handle the rough days with more perspective. Love to you all! Janalyn

Sunday, January 16, 2011

So the week before Christmas Cicily's favorite neurologist had a heart to heart with Chris and I about Cicily's MRI. Basically it doesn't look any different. There's still no white matter, which is what we expected. The Dr. showed the MRI film to 12 or so colleagues and they all agreed you can't get less than zero! She said if we're seeing a decline in Cicily's abilities, then that's the path we should expect her life to continue taking. Cicily will most likely not live into adulthood. There are no definitives with this type of brain situation. But, the doctor felt it would likely go one of two ways. Cicily will get really sick - a bad pneumonia - and her body won't have the strength or control to heal and recover. Or, her body will slowly lose more and more function. This would mean she'd gradually lose the ability to crawl (which is somewhat happening), sign (also happening), sit, hold up her head, digest food, and so on, and ultimately breathe. As the doctor put it, she'd at some point "stop being Cicily". I hate that phrase, but want to type it instead of say it so I don't cry. I can sometimes talk about her dying in person without crying, but I hate the thought of seeing her "not be Cicily". I can't imagine her living too long without being able to smile, laugh and enjoy life with us. But, there's no way to know how long or when this would all happen.We were expecting all of this news. Chris and I had both independently thought of aspects of Cis' funeral and what it would mean to not have her around. It still sucks to hear it and discuss it all with a doctor. It's also kind of relieving to have some sense of how Cicily's life may turn out as it's been a huge cloudy mystery since the white matter discovery 2 years ago.I think back to how I pictured her life shortly after she was born: "By the time she's 20, you'll never know all she's gone through, she'll have a 'normal' life. It's ok if she can't talk 'on time', at least she'll still walk when she's 'supposed' to." Then when she was 3: "Well, she doesn't have white matter, but she'll just take longer to talk and walk than we expected. At least she learns as fast as other 3 year olds." Now that she's the ripe old age of 4: "She's going to die, possibly slowly and painfully. At least she smiles and sincerely enjoys life (at least - for now).

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Cicily at 8 years old

About Cicily

Cicily has degenerative hypomyelination (leukodystrophy) - no white matter coating her brain, which is terminal. For Cicily, this means she has limited motor control and "shakey" movements. It does not affect Cicily's cognitive abilities, as she communicates and learns at a standard level for her age.

Cicily also has Treacher Collins Syndrome. For Cicily this basically means she was born with a cleft palate, small lower jaw, small ears, and no ear canals.

Cis is such a tough girl though, and she's so easy going. She handles all of her difficulties so well. She's certainly up for her challenges! She continues to be a medical mystery and a joyful girl.